Not a question, but just a concern - British Lung Foun...

British Lung Foundation
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Not a question, but just a concern

The-perfect-storm
The-perfect-storm

Hi,

I've recently been diagnosed with Pulmonary Fibrosis at quite an advanced stage from what I understand. I have had one appointment with my lung specialist where I was diagnosed but now my 2nd appointment has been cancelled til further notice due to the current situation.

I just feel cut adrift on a stormy sea, I have been off sick since diagnosis in January.

I have questions, concerns etc that I now can't voice til whenever. I believe my condition puts me in the high risk category (Interstitial Lung disease) yet I havent yet received a letter to this effect so beginning to feel that my self imposed 12 week shielding is OTT and I'm panicking. I think I'm being very factual and logical, in the mean time my wife has still got to work so we are aware of the risks there as well.

Do you think I'm overeacting or are my concerns real or just perceived?

I would just add that my first appointment was not good (being told you are more ill than you thought) and now I've had time 'to get my head round it' I am ready to move forward and deal with it from an understanding point of view and that's how I am I deal with things head-on preferring to know rather than being handled gently.

Thanks Si

10 Replies
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Yes you are at high risk and as your diagnosis is recent perhaps you haven’t been picked up on the system. Your Gp surgery may be able to get you on the list so you can receive relevant information and support . Take care stay at home and be safe.

Thank you

Find out if your unit has a specialist ILD nurse, mine does (bronchiectasis is my main problem but she combines both roles). She is just brilliant, very knowledgeable, proactive and supportive. I feel sure you should be on "the list" and isolating for 12 weeks.

Failing that, this charity has a telephone support line, you may know about it already actionpulmonaryfibrosis.org...

I don't think you're overreacting, ILD is a pants diagnosis and, covid-19 or not, you have to take this seriously and get the best information and care you can. Be as assertive as you need to be. I'm with you, knowledge is power ;)

Thank you

I've just done a search of my local hospital departments, there is a specialist ILD consultant nurse. I have also left a message on my consultants secretary's answer machine asking if I can submit some questions to him, so feel like I've taken a step forward again rather than things just happening to me. Many thanks

How do you know it is advanced what did they say to you? I was diagnosed with IPF almost three years ago after a CT scan and read up everything I could about it.Not a good idea as it can be very scary and confusing!! We are all different and numbers are average re prognosis etc.My consultant warned me away from the Internet! I write my questions down and save them for him. My status at my last scan was listed as moderate to severe. I can't say much has changed apart from having a nasty bout of pneumonia last year. Our surgery has a Respiratory nurse,could you talk to her? Ours is very good.

I got referred in the end due to a developing and persistent cough and waited over a year to see the specialist. I was told what I had and the original consultant was quite annoyed that I had had a number of chest x-rays over the previous 3-4 years and the condition was evident then and wasn't picked up. He then cross referred me to a lung specialist who he said had much better knowledge of this condition than he did.

I had a CT scan and was told I had extensive ILD but after further investigation it has been decided that I am unsuitable for either of the two drugs used to treat the condition. I have been told that the condition is progressive but the speed of progression is very individual so I'm lucky or I am not. My cough is getting worse, I am finding it more and more difficult to talk and the breathlessness is debilitating even with light activity. I do read about the condition but I find the info is very repetitive the site here is quite informative and I find it helpful.

I will talk to the hospital either through the consultant nurse or the consultant, so hopefully my journey with this condition can be managed as best I can with the support of my medical team i.e. GP and hospital team

Regards Si

No you are not over reacting, I to have the exact same disease that weakens the lungs, you must protect your self and those around you, I have been self isolating for a while, and not been able to see my children and grandchildren. Just stay safe and well. God bless you and yours.

Ernie (74)

Thank you Ernie, much appreciated

I was diagnosed in 2007 with Pulmonary Fibrosis because of Lupus which damaged my lungs causing the Fibrosis.

I was never told there was any stage such as advance. I have had several medications to try and stop the inflammation which also caused the fibrosis. Most of them only worked for a few months and then I have to try another.

In 2013 I asked if I could be given oxygen because the breathlessness was getting worst so I was tested and put on 4 Litres of oxygen per minute which at the time was mainly for walking about (ambulatory) after a few weeks it had to be changed to 6 which I have been on ever since.

I did also asked if I would be a good candidate for lung transplant and was told yes but I felt I wasn't ready and later when I did say I was now ready was told I couldn't because I suffer from Gastric Reflux.

I haven't received a letter but I got a text with a link to a video from my Rheumatology department to explain that I have to self isolate and be shielded for 12 weeks and I will receive a telephone or video consultation for my next appointment.

Hoping and praying you will get the right answer soon.

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